Category: Sue’s Musings

Comparison Shopping

Good evening! I am doing some comparison shopping here. Lin and I were looking at some TV magnifying glasses at the request of a reader. We found the Eschenbach ones I have for $164 and another pair for $49.

What the hey, for $49, I will order them. The truth of the matter is, I am REALLY hard on parts. My CCTV has been replaced and then repaired. My handheld reader was smashed and I had to replace it. My max TV glasses have also been replaced once. And we cannot forget the crack I have in my iPad screen. Can you say “bull in a china shop”? The day is going to come that the people repairing and replacing my stuff are not going to be so understanding. Better have a spare available.

So, the $49 max TV glasses came today. I gave them to my husband to be my “comparison shopper”. Then we compared notes.

The Eschenbach pair is the superior product. They are heavier, possibly because they had solid temple pieces. The inexpensive glasses are not quite as “solid state”. When I leaned forward the telescope part slipped and I had to readjust my focus.

That said, I can see just as well through the $49 pair as I can through the $164 pair. Nice and clear at 2.1 magnification, same as the Eschenbach ones.

Moral of the story: if you are not hard on parts, you don’t mind adjusting the wheel regularly and you do not have $164 to spend the more inexpensive pair may be for you. They are manufactured in China by Joyutoy and are available, of course, on Amazon.

Those of you who are using assistive technology and have any comments on it, please share. I would like to do more of this but there is a limit to the funds and we still have not found a multi-millionaire corporate sponsor (although we remain forever hopeful?)

Moving right along, Lin sent me an article written by Dan Roberts, the guy who wrote The First Year: Age-related Macular Degeneration. Roberts apparently does a yearly wrap-up on the progress, medical and technical, that has been made in fighting and dealing with vision loss. I followed one of the links to Living Well with Low Vision and glanced through some of the technology.

Under text-to-speech readers was something called the Aries Smart Reader. Available from Enhanced Vision, the Smart Reader weighs under 5 pounds. The cost is $1800.

That is pretty much what I know about it. I have not seen it nor do I have a clue how well it works. For me, personally, it is going to stay in the warehouse. Two big sellers for me are portability and price. I have enough to carry and I do not have a spare $1800 to burn.

I have limited need to have text to speech capabilities at this time. When I do need them, I have my KNFB reader on my iPad. Zero additional weight and a $100 price tag. Of course, for some unbeknownst reason my KNFB ‘girl’ is Australian! No problem. The couple of Aussies I have met have been good people.

Again, I am speaking totally personally about preferences and have never laid eyes on this product. Different opinion? Let us know and we will publish it. Continue reading “Comparison Shopping”

Wanted: Tech Savvy Teen

On the hunt again. This is what happens when you give me free time…or more accurately when I need to write a psych report and I am NOT in the mood. (Thank you for giving me a reason for my procrastination!)

What I am hunting is how to set your devices to play the audio descriptions on movies. This is actually amusing because I may watch about three movies a year. Netflix? Most people love it but I have never subscribed.

That means we are again in uncharted waters for me. Good luck and may God be with you. Here we go.

Chatty Chelby has a YouTube video on how to turn on descriptive audio on Netflix and using the internet browser, Xbox 360, Android phone and iPad. She completes the job for all devices in a less than five minutes presentation. Seems easy. An example of audio descriptions was included in Chelby’s video and it was detailed all the way down to the ‘arc of light’ going over Cinderella’s castle in the Disney intro. So far so good. Thanks Chelby!

Accessible.org has a page on “How do I turn on captions or descriptive audio in my media player?” For those of you who are not computer literate media players are on computers. The article contains directions for several different operating systems. This article should be helpful if you watch TV or movies on your computer.

I keep looking for articles that will talk about standard DVD players in the USA. Not doing so well for the States but kudos to the Aussies and the Kiwis. They have a couple of informative sites on this matter.

Here we are! The Audio Description Project, “an initiative of the American Council of the Blind” has a rather large and imposing but quite comprehensive website pretty much covering everything in the good ol’ U. S. of A. when it comes to getting audio description on your device. DVDs are second row, next to the last. If you are as tech savvy as I am, you might want to borrow someone’s 14 year old son for this project. He should have it done in about 5 seconds. Me? I would swear a lot.

Now on to the UK!

Well, as usual, the Brits are more interesting than us Yanks! June 26th they are having a workshop called “Audio Describing Burlesque”! Intriguing. The workshop “tackles the challenges of describing risque dance performances with discussion and practice”. Is that practice in risque dance????? Fish and chips optional. I guess you don’t want all that fried food if you are practicing risque dance.?

OK. All fun aside, the BBC is supposed to provide 10% of their programming with audio description. A little paltry right now but I know the people who gave us Dr. Who will improve on that! And they have a website, Help Receiving TV and Radio that has a special section on audio description.

So, here you are, another assignment. Go out on the street and grab the first, tech savvy looking teen you see. Bribe him to set this up for you and you should have some idea what is happening on TV by this evening. Including the risque dance, of course. Caio, caio!

Written May 29th, 2017

Continue reading “Wanted: Tech Savvy Teen”

Time On My Hands

Memorial Day, 2017 and it has been raining off and on for all three days of the holiday weekend. Right now it is ‘on’ and raining hard.

I have been taking the opportunity to do some other things. For example, I pulled out all of the furniture in the sunroom and ‘really’ cleaned. All the while I was doing that I was listening to the latest Jeffery Deaver book, The Burial Hour. Good ‘read’. Love my BARD.

I also wrote the questions for the review game for DBT class. Wednesday is the last day of distress tolerance and we go right into mindfulness. Get ready for more ‘thoughtful insights’! Ha!?

And in other news, I have done some very basic cooking. Gasp!

If you have been following along you know some basic and not always flattering things about me. For example, I am a slob. Also, if God wanted me to cook, He would not have invented restaurants! Domestic goddess? Not me!

While I am not planning on retiring (and as of last week, no one was planning on letting me go! Praise be!), I am cognizant the time is coming I will be home with time on my hands. Also, on a budget that may not allow regular restaurant meals. Maybe it is time to practice (how about start to develop?) my culinary skills!

To that end – and also for a page! – I came upon what looks like a nifty little web site. The title of the site is BlindHow. This thing has links to other sites with cute little monikers like Cooking Without Looking and The Blind Chef.

But the site also has other stuff. There are links to just about every practical skill you can think of. Shopping? Laundry? Personal finance? They have links.

Speaking of audiobooks as I did above, I found a link entitled 91 places for free audiobooks online. If you do not quite qualify for BARD, you could probably find an audiobook site that is not as ‘exclusive’. La di da.

The site also has links to information on movies with ‘descriptive audio’. From what I gather, this is a system aiming to keep the blind guy in the back of the theater from asking “what’s happening now?!?!” in all of the suspenseful or sexy parts of the film when everything has gone quiet.

Anyway, following a link, I found a site called MoPix and sponsored by the Media Access Group. They have a list of about a dozen movie theater chains in the US offering headphones and devices that will allow you to access the description apparently embedded on certain flicks. The list of those was pretty long, too. [Lin/Linda here:  I found this link that says that MoPix has shut down. Their Facebook page had no recent posts. Sorry.]

I would volunteer to go and check it out for you but our local movie chain is on a short list of chains that do NOT offer the service. (Did you notice the local paper was not available over the phone either? What the…..?)

Oh, but if you don’t have cooperative local providers (dig, dig), the American Council for the Blind sells ALL of the DVD and Blu-ray discs manufactured with descriptive video since 1997. Do you need any special equipment? Not sure. Links for some of the movies take you right back to Amazon. I did not see a special offering of DVD with audio descriptions but I am legally blind; remember? May have looked right over it. [Lin/Linda here:  I do not think that you need special equipment for DVDs & Blu-ray disks but check here first to be sure regarding particular devices. ]

Anyhow, BlindHow looks like a winner. Problem is, it probably just took away all my arguments for a housekeeper and a cook! Dang.

Written May 29th, 2017

Continue reading “Time On My Hands”

Good Guy Force

We could be a force. Really! According to ScienceDaily (4/27/17) we are up to an estimated 14 million AMD sufferers in the States alone. That is one big number of visually impaired older folks!

We already know knowledge is power. Numbers are power, too. It is hard to ignore that many people. That is slightly more than the populations of Buenos Aires or Istanbul. Wow.

So now that we realize we have so much power, we need to decide if we want to use it for good or evil. Silly question! We all know we are the Good Guys!

Good guys go out and rescue people; right? Well, it turns out there are a heck of a lot of people who need to be rescued!

What am I talking about? David Neely at the University of Alabama re-examined 644 people who had been given clean bills of macular health based on routine eye exams. Double that to get the number of eyeballs, 1288.

Neely found 320 eyes had AMD! That is 25%! There was not a whisper in medical records about any of these eyes having drusen. Undiagnosed AMD was associated with older patients, male gender and less than a high school education.

Maybe there is no treatment for those eyes now, but what about in five or ten years? By then such lapses in diagnosis may mean the difference between an easy fix and serious problems.

Hot Topics Small Talk (volume 2, number 5) also picked up on Neely’s work and make a nice, little summary sheet for us. This summary noted it is harder to visualize the retina during routine exams in older adults. Maybe ‘routine’ should become a bit more rigorous? The pathology was observed using fundus photography.

Other findings cited by Hot Topics? The presence of cataracts did not contribute to misdiagnosis. Also, it did not matter if the initial exam was done by an ophthalmologist or an optometrist.

Essentially, this research suggests we could be over 17 million strong (and I mean that word, strong) if these early cases were not being overlooked. Like I said, perhaps not essential now but possibly crucial in the future.

So, your mission, should you choose to accept it, is to encourage everyone, but especially older folks, to have fundoscopic examinations of their eyes. As usual, should any of your AMD Good Guy force be caught doing this, we will be very proud of you. This page will self-destructive in ten, nine, eight…… Continue reading “Good Guy Force”

Uneventful Trip

Just came back from Walmart. When I checked the early days page Lin had published for today it was my first trip to Walmart as a visually impaired person. I would say what a coincidence but this girl has been known to ‘live’ at Walmart so it really was not.

Anyway today the trip to Walmart was….totally uneventful. Fine. No issues. I tell you this because in my cockeyed optImist (yes, there’s an upper case “I” in the middle), Pollyanna way I want to reinforce the concept there is hope. Yes, I have geographic atrophy with no scarring – just ‘no’ macular; my ‘divot’ just keeps getting bigger. And yes, I have no clue what it is like to be you in your situation.

However, for the great majority of us things can be OK with adaptations and the learning of skills.

I cannot drive myself to the store. My husband now parks near a cart corral. He makes sure I know we are down the line from the garden center or bank sign or whatever and then he turns me loose. I generally find my way back without incident. Do I wander around lost sometimes? Sure do. It is a matter of my not paying attention in the first place. I did that when I was fully sighted.

Absent mindedness is not a side effect of vision loss!

In the store I am using eccentric viewing…a lot. Although I carry my toys just in case, I seldom get them out. I have learned to use my peripheral vision and I am pretty good at finding things I need…and things I don’t need but really want. Got (another) cute pair of yoga pants and (another) cute scarf today.

There are times I have to be more careful and really LOOK. For example, I almost picked up hot sausage instead of mild today. If there are several varieties of something and the packaging is very similar you need to double-check. When you don’t drive often things don’t get returned. I have a chili potpie in the freezer that I could have sworn was beef. Been there for weeks. (Perhaps this is an opportunity to expand my horizons?)

I use a lot of habit learning. The credit card machine is now easy. That is habit training. I pretty much know what comes up next. Press the same buttons all of the time.

And if I don’t know or cannot see it, I ask. Sometimes I admit I am visually impaired. Those are generally the times when I know a full sighted person would have been able to figure it out and I don’t want to look like an idiot. Other times I just don’t bother to ask.

Nobody thinks the less of you if you cannot find something like the honey. Fully sighted people ask questions like that, too!

So there you go. One more page about my uneventful life. Stay tuned. Next I might write about watching paint dry!

Written May 28th, 2017

Continue reading “Uneventful Trip”

Improving Communication: Part 3

Hello! Rode my bike to the Y. Took a couple of classes and rode home. Then it was dog walk time. Right now I could stand a nap! Hopefully I can stay awake enough to write a sensible page. A little wonky? You know why!

I have continued to look for more information on loneliness and poor, social relationships for the visually impaired. You remember, miscommunication because of lack of nonverbal cues.

[If you have not read Sue’s previous 2 pages, I suggest you do that before continuing.  First, there’s Improving Communication: Part 1, then Improving Communication: Part 2]

The Pocklington review ended up saying there are no current answers. They called for more research. Hopefully the increasing numbers of us visually impaired will encourage someone to get on the proverbial stick.

Once again, there should be some sort of manual for this but I cannot find one. (Back to if you want something done right, do it yourself! Anyone want to make topic suggestions?)

An abstract from work done by Wang and Boerner indicated responses in their study fell into two categories. Sometimes the visually impaired adjusted their behavior while other times they just let the relationship go bad.

The group who tried to maintain relationships depended upon a few different strategies. These strategies included explaining themselves more and being more assertive. They also included relying on other senses for information, faking it and being more selective about whom they interacted with.

Remember several articles I read for both vision and hearing impairment stressed the need to share you have a disability. That can be hard for some people although not admitting to a disability can end up being harder in the long run. Sometimes we just gotta accept.

The people who let relationships go of course did things differently. They would withdraw and make fewer efforts to socialize. They would also become angry and tell people off.

As I research this, I keep coming back to the need for work with a good speech and language therapist to improve communication skills. Or at least that is my conclusion. Once again I could be dead wrong.

Quite a while back an Italian study, Extracting Emotions and Communication Styles from Prosody, included some neat charts that are basically a guide to identifying speaker emotion from prosody. Prosody is the pattern of stresses and intonations in speech. For example, joy is characterized by factors like quick meter, quick attacks and slight or missing vibrato.

If these characteristics have been identified and listed, it means people can be taught to recognize them. And if we can be taught to recognize them, we can harness them in efforts to improve communication which just might lead to fewer feelings of isolation and loneliness. Maybe?

….for what it is worth. That’s what I got. If there is a definitive answer out there, I don’t got it. I can’t find it. Anyone have any other ideas, let us know and we will pass them on.

These three pages were in response to an inquiry from a reader. If she knows one person with these concerns, we suspect there are dozens more lurking in the shadows. By addressing her concerns – or yours- we may help others.

Keep those cards and letters coming!? Continue reading “Improving Communication: Part 3”

Improving Communication: Part 2

Continuing on with the review from the Thomas Pocklington Trust, I discovered once again we, as the visually impaired, have not been given a lot of attention or press by the social sciences. It was remarked research on visual impairment and social isolation is rare and good research on the subject is even rarer. [If you’ve not read the page before this, click here.]

One of the articles reviewed and praised was Heine and Browning’s (H&B) research on communication breakdowns. The Heine and Browning research was one of the few that did not just agree that social isolation happens but actually proved it scientifically. They also made some suggestions about fixing the problem.

Because of not reading all sorts of (now inaccessible) visual cues, people who have low vision tend to misunderstand and commit faux pas. If uncorrected, these mistakes can lead to serious, social problems. H&B suggested the visually impaired be taught repair strategies for communications.

OK. Unfortunately, when I went online most of what I found was aimed at the hearing impaired. Strategies to Assess and Improve Communication Repair Skills was an informative piece…for someone working with hearing impaired children. The suggestions were repetition, revision, addition and nonverbal with a note saying hearing impaired children put more emphasis on the nonverbal cues as they get older. Great. Not that much help.

Anyway, communication repair strategies might be a good thing to learn if you are really putting your foot in your mouth in conversations. There might be a speech and language therapist you could speak with to get some pointers. You can find speech and language therapists at most rehabilitation facilities.

H&B (above) also suggested support groups. There people who can no longer read nonverbal cues can get pointers from others and sharpen their skills.

One of the problems pointed out by the Pocklington Trust review is everyone else sees the communication problems of the visually impaired as OUR problem! They want us to focus on ‘our’ problem and get some sort of remediation to ‘fix’ ourselves!

The fact of the matter is: there is no fixing our sight problems. Communication has a very LARGE nonverbal component and it is very hard for the visually impaired to pick up on those messages.

It is important that sighted people help to smooth out rough communications and help the visually impaired integrate better into general society.

Are they going to do this? Not without requests and reminders they are not.

So back to the review, which is from the UK, by the way. Supposedly, the UK has something called the adult UK sight loss pathway as part of the UK Vision Strategy. Again supposedly (the article says only about half of their eye clinics provide early intervention support) part of this plan is to have available Eye Clinic Liaison Officers to provide direction and emotional support. It is supposed to be a way to give people early intervention.

As usual, it seems if you want something done right, do it yourself. If you have a support group in operation, you might enter into agreements with your ophthalmologists. Ask them to give your name out to all new cases. Be your own eye clinic liaison officers.

So no, this page does not answer the question asked. I cannot seem to find a good answer. I will keep looking, though. Continue reading “Improving Communication: Part 2”

Improving Communication: Part 1

TGIF! Greetings from the land of organized chaos, aka my life!

I have not been writing as regularly as I would like. For one thing, as I keep pointing out, there are lulls in the action with AMD. You adapt to a certain level of loss and things are calm until the next loss of vision occurs.

Crank up the magnification and soldier on until the yet next disaster. Lulls are not all that page worthy…and I don’t need a disaster right now.

The other reason is my days have been flying! I am taking more counseling clients and my days are jam packed. Nothing like being busy to make the time fly!

All of this by way of saying, I am sliding into a holiday weekend (Happy Memorial Day!) and I am going to try to pound out a few pages over the next few days.

We stopped for deep dish pizza on the way home. (The new comfort food!) I walked the Beastie Baby in the neighborhood and the field. She drank from every rain puddle (mud flavor! Yum!) and we investigated what looked to me like bear scat (poop, no bear. Life is good). Well fortified and with the ‘adventure’ out of the way, I guess I am ready to go.

The topic was suggested by one of our readers. She is located in Massachusetts and has just helped to launch a new, vision loss support group. (Kudos!) The topic had come up in her support group: vision loss and social isolation.

The short answer is “yep”. Problem is, I rather doubt I can make a page out of that. In trying to flesh things out a bit, I came upon a publication by the Thomas Pocklington Trust. Published in 2013, this literature review contained 44 pages on the topic. Good resource. [Lin/Linda: it’s 44 pages if you download the Word version; 8 pages for the PDF version which is what I’ve linked to.]

The review starts by pointing out loneliness is not part of natural aging. Loneliness and social isolation are also not inevitable for the elderly, visually impaired population. (So maybe “yep” is not the short answer?)

That said, however, it is easy to see how vision loss, loss of function and depression can lead to social isolation and how social isolation can loop back around and cause more depression, etc. People with vision loss can really end up in a nasty downward spiral.

The review acknowledges the problems that can come from not recognizing faces and facial expressions. Without nonverbal cues to go by, communications can easily breakdown.

Lack of good social communication can break down social relations and lead to a drop in feelings of self-efficacy. Feeling you are not able to adapt and cope with your loss once again leads to all sorts of issues and perpetuates the downhill slide.

I think I mentioned before that feelings of self-efficacy are exceptionally important to mental health. The “I can do it myself” attitude can be reinforced by success in using assistive devices. In another page I believe I quoted something that said one of the best predictors of life satisfaction is access and use of assistive technology, both high and low tech.

OK. To be continued. Since some of us have trouble reading long text, I will stop here for now.

Continue reading “Improving Communication: Part 1”

Yesterday’s News

Good morning! Lin just shared a video clip from something that looked like a local TV, health program. The clip was on geographic atrophy. That is GA to those in the know.

I have no problem with information being shared with the public. In fact, I think it is a good thing. The more exposure we get and the more noise we make I am hoping two things will happen. One would be law makers (read the deep pockets of government) will be more aware and sympathetic to our plight. (They might also come to realize it is going to cost BIG bucks to care for us!) The other will be people who have AMD will become more knowledgeable and go for help and support.

There are some drawbacks to these little TV presentations, though. For one, they are a bit behind the curve when it comes to breaking new news. The show talked about a fantastic, recent development that would help people with GA.

Fantastic? OK. Helpful? Yep. Recent? Only if you consider research published in 2013 to be recent.   So shoot me. I am an information snob. That information was just too yesterday’s news for me.

I also think they present half information. If you listen to the clip you will hear the expert talk about a ‘subset’ of patients who cannot be helped with current treatments. Not to put too fine a point on this – and look out because I can feel myself getting ready to rant! – but, honey, the group that can be helped with current treatments is the subset! 15% of AMD patients ‘go wet’. The 85% of us who are left are not the subset! (Told you I was going to rant!)

In the clip there is the implication that replacing RPEs will restore sight. We have talked about this a dozen times before. In GA the photoreceptors are dead. There is no sight without photoreceptors. The RPEs are support cells for the photoreceptors. They do not do any of the ‘seeing’.

But my big complaint about this clip? The expert says your world ‘ends’ when you develop GA!!! (Now I am really revving up. Head for the storm cellar!)

With every significant loss, there is a time of dismay and distress. That does not mean the end of your world! Everyone of us here is made of tougher stuff than you could ever have believed. Maybe you have never been tested before, but the steel is there.

Today I taught my class. I attended a staff meeting and saw two clients. Then I came home, walked the dog and made a meal. I am now writing this page. After that I have a psych report to write. Then maybe some down time ‘reading’ a BARD book.

Tomorrow I work, walk with a friend and go to my yoga class. I am making plans to go into New York City with a co-worker next month. The list goes on.

In short, if my world ended a year and a half ago, nobody bothered to tell me about it! I am still going pretty much full tilt!

So, bottom line? I guess it would be listen to the stuff in the media but remember it might not be accurate or current. Once again, caveat emptor. Best sources still remain published research. If you cannot read it or cannot understand it, ask Lin or me to look at it and we can tell you we don’t understand it either!

And about that end of the world business? Don’t believe everything you hear! GA is not a walk in the park. However, if you want to, you can still do that and dozens of other things as well.

Continue reading “Yesterday’s News”

Sisters Are Doin’ It For Themselves

I have paid a lot of attention to the male movers and shakers in vision research. Perhaps it is time to note the contributes of the women. Recently I have come upon short articles about the research of two.

Sally Temple, SUNY-Albany, and her colleagues recently published a paper on how nicotinamide can suppress the progression of AMD. Nicotinamide is a vitamin B3 derivative.

Dr. Temple took pluripotent cells, that is stem cells, from people who had AMD and those who did not. She manipulated the stem cells to become retinal pigmentation epithelial cells and grew them in her lab.

One of the first things Temple and her team noted was the cells from the AMD people acted differently from the RPEs grown from healthy subjects’ cells. The cells from people with AMD produced different chemicals. The chemicals were the same ones that figure in the production of drusen and contribute to inflammation.

These were RPEs growing on a culture medium in a glass dish. There was nothing else to contribute to the formation of the chemicals. The chemicals had to be coming from the RPEs. And, with no other possible influences, the cause for the production of these chemicals pretty much had to be genetic.

The fault, dear readers, is not in ourselves but in our genes. One more tally in the genes are destiny column.

But the good news is, when they squirted (or whatever) nicotinamide on the offending RPEs, things improved. Chemicals that are responsible for the bad things were less and the RPEs survived longer.

Perhaps if we find a way to get nicotinamide directly into eyes, we will get the same results in vivo as in vitro. Worth a try.

Masayo Takahashi is a Japanese researcher. Takahashi has been experimenting using pluripotent cells taken from the same people they are going back into. No embryonic cells required.

There is excitement about this new procedure not only because of ethical issues. There are indications this procedure will be cheaper and faster to implement. In additional, they are thinking people can ‘bank’ their stem cells. These can be used either for ‘repairs’ in the original cell ‘owner’ or they can be given to other people who are immune matched. (Sort of like blood type matching. Don’t want the body getting up in arms over the ‘invading’ materials.)

Bottom line is the ladies are out there rocking it just like the men. They continue to come up with great new findings and each one takes us a little bit closer to effective treatments and maybe – just maybe – even a cure.

To copy Lin’s use of old song titles, “sisters are doing’ it for themselves”. And they are doing it for us, too! Continue reading “Sisters Are Doin’ It For Themselves”

Touching Tribute

Hello again. Lin just told me she was all caught up with my pages. Silly girl! [Lin/Linda: I should know to keep my mouth shut!]

Either the muse has struck again or I am just trying to avoid doing real work. Not sure but I have some page ideas!

This morning when I was scrubbing the tub – in the corner, in the dark and with extremely poor contrast – I found myself running my hand over the porcelain (or whatever it is they make tubs out of these days). The soap scum was bumpy and I could feel where I needed to put more effort.

I started to think about how often anymore​ I use touch. If I cannot decide what something is by looking at it, I touch it. Often just feeling if it is hard or soft will give the necessary clues for identification.

We all ‘know’ we should harness our other senses but we can be self-conscious about touching things. I found Chapter 3: Encouraging Vision Through Touch (chapter 3 from what? No clue) and in there it is said America as a society is very avoidant of touch. How many times as a child were you warned not to touch? While we still have those directives in our heads, they won’t serve us well now we are visually impaired.

However, how much sense does it make trying to find the keyhole with poor vision when all you really have to do to succeed is run your fingers around the knob? Isn’t it better to feel the end of a screwdriver than to put it right up next to a vulnerable eye? (Examples from “Chapter 3” with thanks). Some of this stuff sounds like common sense but common sense is not all that common!

I have been looking for exercises to develop the tactile sense in adults. I have had zero luck. There are dozens of offerings if you want to learn about visually impaired and deaf-mute blind kiddos. Just nothing for us ‘older children’.

So, not being able to quote an expert, I have to offer ‘common sense’ advice. Use your sense of touch. Put your hands on things instead of your nose!

Fun facts from Getting to Know You: An Individual Differences Approach Beginning with Sensory Assessment:

  • There are six types of sensory information that touch can detect. There are deep and light touch, vibration, pain, temperature and how many points of contact there are
  • One fingertip has 9 feet of blood vessels and 9000 nerve endings
  • Hands are used to see, hear, release tension, communicate and as tools
  • Haptic perception (size, shape, temperature, hardness, texture, weight and even spatial perception) are generally developed by 15 months of age

In short, you have hands to not only manipulate your world but to explore it as well. Use your sense of touch! Continue reading “Touching Tribute”

Hodge Podge

This may end up as another chatty, hodge podge affair. There is really nothing major happening and in the world of progressive eye disease nothing major happening is a good thing!

So, actually, I guess that is my first offering here. Those of you who have recently received your diagnosis or have had a crisis and are really distressed – it is not all drama and disease focus for the rest of your life.

You adjust and other things take center stage. That is not only normal but it is a good thing.

Second offering is something I picked up last month at the support group. When I said dry AMD is the base disease, they looked at me as if I had three heads. What I meant – and what they had not gleaned. Why won’t people do their research! Or minimally ask questions? – is that even though the shots have stopped the neovascularization, the growth of new blood vessel that lead to a bleed, you still have the underlying cause of the problem. The cause is regular, old, dry AMD.

This is why, even though you think the stuff we publish on dry AMD does not relate to you, it does.

Wet AMD is one type of end stage AMD and geographic atrophy is the other. Stopping the bleeding does not eliminate the underlying disease. It just eliminates the symptom.

Which brought me to another thought. I have never seen anything that says if an eye prevented from going wet will go to geographic atrophy. Hmmmmm…..

Nuts! More to worry about. Kaszubski et al in Geographic Atrophy and Choroidal Neovascularization in the Same Eye: A Review stated there are people who can have both forms at the same time. Geographic Atrophy generally happens first. (That part is bad news for me although I am under the impression that for me there is very little left to ‘save’ by building new blood vessels.)

To follow the question posed above, though, they also say there is some evidence anti-VEGF shots can increase the chances of GA development.

While that is bad news for you getting the shots it does NOT mean to stop your shots. No shot and you will bleed. Bleeds lead to scarring and certain vision loss now. GA is slow and lead to vision loss later. Given a choice, battle the bleeds and worry about the atrophy later.

End of lecture.

Other than that, in real time Memorial Day approaches and I am thinking summer. Although I know there is ‘no rushing city hall’ (to paraphrase another old chestnut), I started looking up Astellas and Robert Lanza again. Just to see what the dear boy is up to. I have been hoping to get to Philly and the clinical trials this summer. It would be perfect timing for me but I am not sure about the Astellas Institute of Regenerative Medicine (AIRM). They will need to give Wills the go ahead to start one of ‘my’ clinical trials before anything happens for me.

Astellas is gearing up for something, though. Something big. A couple of years back they bought OCATA for $379 million. Now they are on a hiring binge and are looking for a bigger location in or near Marlborough, Mass.

In the business articles I read Lanza purposely hyped the work they are doing on AMD. I am assuming that is still their big thrust. (That is even though AIRM is in a variety of areas of regenerative medicine and Lanza himself is intellectually all over the place, including developing a theory of the Universe!)

Anyway, seeing this big a build-up with lots of business chatter tells me something is going to happen. Just hope it is in the trial I have volunteered for. My eyes and I are not getting any younger! Continue reading “Hodge Podge”

A Stuffed Black Dog

I am practicing my DBT skills on myself today. Today was the day I was supposed to get a new pool liner. Supposed to being the operative words.

I have spent several years trying to extend the life of the old liner with gorilla tape! That one was always a bit of a debacle. I picked an installer at random – and did not find out he had been driven out of business three times before that until I was having problems. (Note to self: research tradesmen!) When hurricane Ivan came along and pushed up the bottom of my pool, I was not able to get a lick of help from that guy. My pool bottom had lumps with wrinkles radiating in all directions. I was dreaming about GIANT spiders living in the pool!?

But that is not why I am practicing my DBT. Today was supposed to be sunny and 80 °F. It is 56 and raining. My pool is drained and there will be no new liner for a week. Frustrated, but it is what it is. No controlling the weather.

Also, why ruin right now thinking about the swamp smells that might (face it, probably will) be coming off the pool until we get the new liner in? My fussing won’t make it smell like roses!

One of our readers/member of our Facebook group recently sent some comments about her first injection for wet AMD. When I read what she had written, I realized in some ways she had practiced DBT! Other ways she needed a little reminder to do so.

The reminder first: the days before her first injection our reader spent a lot of time worrying and fussing. After she had her shot she was sort of upset with herself because it had not been as bad as she had envisioned. She had wasted a lot of time being in a tizzy about it all!

Yep. My pool may not stink as much as I believe it will. The only way to find out is wait and see…and don’t waste time and energy worrying about it.

Reality dictated our reader had to have her shot. Otherwise there would be bigger problems. Reality says I am going to have a swamp in my backyard. No avoiding it. Might as well accept it will happen.

Both our reader and I know what caused our respective messes. She has ‘bad’ genes and my pool guy got a bum weather report. But even knowing what happened, the causes are not under our control. No sense fussing or saying it should not be happening. Better to practice ACCEPTS and get through it. [Lin/Linda: Click here for one of Sue’s pages on ACCEPTS.]

And you know what I loved? Our reader practiced a self-soothing skill through touch! She took a stuffed animal (a stuffed black dog) with her to help her through.

Another DBT skill she used (whether she knew it or not!) was effectiveness. That stuffed animal may not have been a ‘proper’ thing for a grown woman to have, but who cares? It did its job and helped our reader through. Remember effectiveness is all about doing what the situation calls for even if custom (or snobbery!) says it should not be done that way. [Lin/Linda: Click here for one of Sue’s pages on effectiveness.]

So, thanks to our reader for letting me use her comments in a teachable moment. As for me, no sense sitting around waiting for the pool to stink. I am off to Walmart. Continue reading “A Stuffed Black Dog”

The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!?) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

Knowing and Doing

St. Paul suggested it is good to “suffer fools gladly” (just found out that is where THAT one came from!). If that is a prerequisite for getting into heaven, I’m sunk.

In case you have not picked up on it for yourself, I will tell you I tend to be critical and judgmental and I have no patience for those who should know better.

I waffle between thinking I should mend my ways and thinking I have been this way for nearly 64 years and people just need to take me for what I am. ‘Tis a dilemma.

Anyway, recently people have been taxing my patience and I have been, shall we say, testy. There have been issues of competence and they have been driving me wild.

Competence is a value for me. I don’t like having to deal with people who do not know their jobs. More importantly, I hate not looking like I know what I am doing (even when I don’t!?)

Since I had my vision loss, I have an underlying uneasiness about becoming incompetent in my job. When will it happen? Will I recognize it when it happens? Will people cover up for me? And if they cover up for me will I leave my profession with a tarnished reputation? I never had these thoughts before but I have them now.

When people irritate me by seemingly (I am trying to be kind here) not knowing what they are doing, I make other people promise to tell me when it is time.

I like to think I won’t have to “pull the plug” for years. I like to think I will continue to be productive in my profession for a very long time. However AMD is a progressive disease and I am at the mercies of my condition. Fast degeneration or slow? Here or there? No one is telling me until it happens. Surprise!

Competence is not only about ‘knowing’. God knows, after 39 years, I really do know a lot and I try to learn more regularly. Competence is also about ‘doing’.

This is the part I worry about. When will I not be able to see well enough to do the job?

So, I have been collecting my group of people who (I hope) will be honest with me. I almost beg them to tell me when the time comes. Don’t let people talk behind my back about how I really need to retire. Don’t let it come to the point it will be a relief to get rid of me.

And in the meantime, I check and double and triple check my work. And I plan. Where to next? I ‘relax’ poorly. There are only so many exercise classes and audiobooks I can handle. I need something productive to do when I can’t “do the voodoo that I do” (sorry, momentary lapse. Did you ever notice how many brain cells are dedicated to old song lyrics?)

The tentative, future plan is counsel, teach, advocate. But that is for later. Right now I can (sort of) see and I get another day to work. Continue reading “Knowing and Doing”

AMD & Autoimmune Disease – A Connection?

Hello, folks! Here we go again with a topic that is so far over my head I never should have even attempted it. Oh well, one of our readers asked the question. And besides, “a man’s reach should exceed his grasp or what is a heaven for?” (Robert Browning – and one of my favorite quotes?)

So you have again been forewarned. I am slogging through medical research and I have no clue what 90% of what I am reading means. If you get confused, just consider who is doing the interpretation!

The question was: can AMD be considered an autoimmune disease?

The answer is probably, maybe. They are working on that now. Can I get back to you? Like next year, maybe?

I am sure we all remember the alternative pathway of the complementary immune system. ? From what I remember things this system deals with include inflammation and the release of macrophages (big eaters) to clean up the mess. Macrophages are sort of the carrion eaters of your body.

According to webMD inflammation is supposed to protect us from foreign substances. It occurs in response to chemicals and involves an increase of blood flow to the affected area. Fluid leaking into tissues can cause redness and swelling. Swelling can cause damage.

Autoimmune conditions occur when there is no foreign invader and the body starts to identify its own tissues as something foreign. Healthy tissues come under attack.

AMD is an inflammatory disease. It would make sense that with chronic inflammation, the signaling system could easily go awry and result in ‘friendly fire’ casualties. By my way of thinking, this might be even more likely because both inflammation and macrophages are part of the innate immune system. The defenses of the innate immune system deal with nonspecific targets.

Morohoski et al. wrote a paper on autoimmunity in retinal degeneration. He (she? It is K. Morohoski) states “a growing body of evidence indicates that AMD pathogenesis too involves ocular inflammation and autoimmunity.”

But it is not just inflammation and the complementary immune system they are now suspecting. Now they are even suspecting involvement of the adaptive immune system. That is the one in which defenses are ‘made to order’ as opposite to ‘one size fits all’. Think antibodies and developing resistance to a disease; that immune system.

Anyway, now they are thinking damage may cause a breakdown of the blood/ brain barrier – remember the eye is the only part of the brain you can see with the naked eye! – and antibodies may be released into the eye. Some of these are retinal autoantibodies. These are proteins that will attack the retina of the host.

So, in answer to the question: it seems reasonable AMD is an autoimmune disorder. It seems probably that not only is the non-specific, innate immunity system in the mix but the specific, adaptive immune system is involved as well. Is it written in stone? Nope? Are they ready to uncategorically declare AMD an autoimmune disorder? Not yet, but I would predict it is coming. Continue reading “AMD & Autoimmune Disease – A Connection?”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

They Get My Goat

Every once in awhile things just GET me. They get my goat – wherever the devil THAT saying came from! They get my goat ‘real bad’. [Lin/Linda: the origin of “get my goat” is at the end of this page.]

It apparently wasn’t enough my left scotoma got denser. I have been handling that – sort of. When I am waiting for a ride to class or walking the dog I have been checking it out and it is pretty opaque now.

I think that action is the visual equivalent of poking at a sore tooth – another old chestnut – and probably not good.

However I think I have discovered something doing it. If I want to see if, for example, a flowering bush disappears, and I want to look at said bush, I focus on a point nearby. I have to consciously put my poor, beat-up fovea on the bush to make it disappear. To me that means eccentric viewing has become a habit. There is at least one positive!

The second thing that has been happening is the weather. It has been raining for days. I am not only tired of the rain, I am just plain tired. There are biological reasons for it. Darkness leads to the production of melatonin and melatonin makes you sleepy. The problem really comes, though, when I am trying to drag myself through that melatonin fog and actually function.

School was Sleepwalker Central yesterday. Yawn.

Wondering if reduced light hitting the retina – or more precisely less retina to detect that light – would lead to being more sleepy. Can I expect to have less energy in the future? No one ever seems to have answers for my questions!

The other issue is people are driving me crazy! While there are people I am dealing with to whom I want to scream “Think! Can you do that? Think!” I am particular peeved with – one more time – the transportation company! Last week I was picked up at 4:55 for a 6:15 class.

This morning I was picked up at 7:05 to be to work at 8:30. Really!?!?!?! What do they think I am going to do when I am 1.5 hours early? Twiddle my thumbs?

I guess what insults me more than anything is the implication (I perceive) my time is not important. “Oh, she is just a visually impaired old lady. She doesn’t have anything better to do.” ‘They’ would say not.’They’ would say it has to work that way because it is a shared ride. I would not believe ‘they’.

Of course, my mind spins out to decades wasted riding the van or getting places obscenely early. I do the math. It would only take 16 days of 1.5 hours wasted to have squandered a day of my life! How dare they?

Problem is, this is my new reality. I bum rides from just about everyone I know but sometimes I get stuck riding transportation. It is what it is.

Tonight I got to the Y slightly more than a half an hour early. I walked to the cash machine and got some much needed cash. One job done. Maybe it is up to me to make sure my time is not being wasted.

About the phrase “get my goat”, dictionary.com says “This expression comes from a tradition in horse racing. Thought to have a calming effect on high-strung thoroughbreds, a goat was placed in the horse’s stall on the night before the race. Unscrupulous opponents would then steal the goat in an effort to upset the horse and cause it to lose the race.”

written May 10th, 2017

Continue reading “They Get My Goat”

Shimmering

Albert Einstein once said “the more I learn, the more I realize what I don’t know.” Apparently I am in good company, because I feel the same way.

With no immediate crises in my life and no immediate reason to freak out – and even with geographic atrophy and permanent retina damage, this state of affairs is possible! – I have been trying to get caught up with some research. I keep running into things I have no knowledge or understanding of.

Lin suggested that after over a year we should know SOMETHING about these things. We don’t. For example, I am still clueless about what I can expect concerning the progression of density of my ‘blind spots’.

And speaking of disease progression, (was that a smooth segue or was that a smooth segue??), I do have a couple of things to say about disease progression from that last article I read. Remember the one on GA?

The article opined all the new interest and hoopla about dry AMD came from the success with treating wet. However it wasn’t why I would think. You know, we have scaled that mountain and are looking for new summits sort of thing? Nope, the reason was they discovered that even after severely limiting the development of neovascularization in eyes, the eyes just kept right on progressing with dry AMD! Sorry, darlings.? It seems a former wet AMD eye becomes a dry AMD eye.

And dry AMD – to my great chagrin – progresses. How much? I assume it can take the entire macula but I have not seen that definitely stated anywhere. I have seen it stated that it generally stops with the macula. Maybe not such a ‘small’ favor. Could be a lot worse.

The last thing I learned from that article is how best to document disease progression. That is with something called cSLO FAF. Isn’t that informative? Exciting even!

OK, OK, just ‘funning’ with you. I looked it up. Fundus autofluorescence is diagnostic imagery. It detects fluorophores in the retina. Fluorophores being chemicals that re-emit lights shone at them. Research quoted by Wu in Use of Fundus Autofluorescence in AMD said risk of wet AMD can be predicted by a patchy reflection pattern and lots of ‘shimmer’ (my word) at the edge of a patch of geographic atrophy is predictive of cell death and growth of the GA. The more ‘shimmer’ the worse the trouble you are in. [Lin/Linda: We hadn’t had a music reference for some time.  When I hear the word ‘shimmer’, I think of John Lennon’s song “Julia” which uses the word ‘shimmering’, hence this page’s title. ::smile::]

So if anyone throws a bunch of letters ending with FAF at you and says you are going to have that, it may be they are checking for disease progression. I cannot remember ever having one, but it is noninvasive so no biggie. Should not hurt. Just more pretty pictures. Hopefully they will find something good.

Pretty much it for now. Will probably write some more nonsense between now and then, but Wednesday I am going to another support group meeting. They are demonstrating an electronic monocular called a Mojo and I want to see it. Will let you know!

Chat with you later!

 

written May 6th, 2o17 Continue reading “Shimmering”

Turn Your Mind

Hello, there! Good day today.

I taught class this morning. What started out as a four man, teaching team – two on for 12 weeks, two off – is now down to two people. Looks like my colleague and I are teaching until further notice. There is a DBT teacher training in the Fall and we are strongly ‘encouraging’ some of the younger folks in the office to take it. Really cannot have no depth in our teacher pool. My colleague has already informed me – should I have a huge drop in vision – she will lead me into our classroom white cane in my hand☺. I would say it is nice to think I would be missed but I believe it has more to do with not wanting to abandon the DBT program?!

Taught radical acceptance today. Made the point it is radical because it involves a huge shift in a lot of core feelings and beliefs.

You don’t accept being someone who is visually impaired over lunch, for example.

That will bring us to radical acceptance being an ongoing process. You remember: “every day in every way we are getting better and better.” Every day we accept a little more of our new identity and the ways we now have to live our lives. It is an incremental thing.

And THAT brings us to turning the mind. [Click here for one of Sue’s past pages about turning the mind.]

I remember graduate school…many, many years ago, but I remember it! There was a diabetic kid living on the ground floor. Every week he would smoke marijuana and get a massive case of the munchies. After eating a couple of bags of snacks, this kid would go into a diabetic crisis and someone would call the ambulance. Rinse. Repeat.

This kid needed a good dose of radical acceptance. (He also probably needed a kick in the ass, but that is another page.) He was not like the other college kids. He could not drink and smoke and eat like them. Not and live to tell the tale, at any rate. That was a fact that was not going to change but he did not want to accept.

Part of the problem was he was in an environment surrounded by other kids all doing what he could not do. He was faced with the choice of going along (and just about dying) or abstaining several times a week.

Turning the mind is deciding to make the appropriate choice….again and again and again ad nauseum. Every time you have a chance to either accept your situation or reject it, you have to force yourself towards acceptance. There is no “just this once” or “I will do it next time”. The situation this kid was in may not have given him a next time.

Life is going to give you lots of opportunities to reject your ‘new reality’ and doing so is very tempting. But in the long run will not accepting reality change it one little bit? I suspect the truth will remain what it is whether people believe it or not. It will still be there to deal with, so you might as well get started. Turn your mind towards acceptance. Continue reading “Turn Your Mind”

Islands of Damage

I have got about 45 minutes before I need to get ready to walk and go to yoga. Had to go to my third job today, just for the half day. My husband took me up and did errands for the morning, then we went to lunch and picked up my framed photos for the contest in the fall. I am four months ahead of the game but I had to pay extra to get them done on time once before. Not doing that again.

Lin gave me an article entitled “The Journey of ‘Geographic Atrophy’ through Past, Present and Future”. Started reading it …finally… today. First thing I read is GA is ‘end stage’ dry AMD.

I knew it was advanced AMD but never gave a lot of thought to it being end stage. Does ‘end stage’ just mean the last stage or does it mean I have almost reached the end of the deterioration? Need to read on.

There is depigmentation of the cells This is a problem because it is the building up and depletion of pigment that allows us to see. In GA you can get to look in and see choroid blood vessels with no difficulty, as well.

I have seen images of my blood vessels in my choroid. Nothing between them and the camera. Essential, my choroid posed naked.?

The article said seeing the degree of degeneration even with the new technology is difficult. That is apparently why my retinologist saw no change in my scans even though I was perceiving an increase in density of my left scotoma.

The article also said there is high variability in the location, number and shape of individual lesions. The makes sense considering my blurry spot is up and right when looking at the Amsler Grid and my ‘sweet spot’ for eccentric viewing is lower and a little to the left. In other words if I center my poor, wrecked fovea at 1 or 2 on the clock face, I can see things between 9 and 3, courtesy of my ‘sweet spot’. Other people are different, of course. Putting each fovea on the center of the Amsler grid and seeing what blurs out can help you chart your scotomata. Then, learn to work around them.

I am not sure if this is good or bad. Exception in a limited number of cases, the fovea is spared until the end. Does that mean I am actually more abnormal than I have always believed or does it mean I am at the end of the process? Dunno.

See why I feel like a mushroom???? Jeez. Need information here!

Geographic? It appears early researchers (and by ‘early’ I am referring to the 1970s! Research and discoveries are traveling at light speed and there is no reason to lose hope something else helpful will be discovered soon) thought the sharp demarcation of lesions like ours looked liked borders of islands and continents as drawn on a map. That is where geographical came from. We have islands of damage in seas of healthy tissue.

Ok. Gotta run. There is lots more in the article though. Will let you know. Continue reading “Islands of Damage”

Why NOT Me?

I am working on my lesson plan on radical acceptance for DBT. In order to truly be able to tolerate distress and build a life worth living – all in DBT parlance, of course – we sometimes have to radically accept a situation we do not approve of and that causes us pain. [Lin/Linda: Click here for another of Sue’s pages about radical acceptance.]

Why radical acceptance? Things termed ‘radical’ effect fundamental nature and have far-reaching effects. Some changes and distressing occurrences threaten us at the core. In order to deal with them we need to accept them at the deepest levels as well. Thus, radical acceptance.

Think integrating a new identity as someone with low vision into your sense of self. Now THAT is pretty radical.

Radical acceptance not only teaches “it is what it is”, no changing reality. It also teaches “everything has a cause”. When I first read that, I bristled a bit. I do NOT feel I did anything to deserve having this eyesight. Not my fault. Then I decided I would need to research it a bit more (after all, I am supposed to teach this stuff!)

Turns out the idea behind everything has a cause is not about assigning blame. It is, instead, to quiet that chorus of voices saying how things should be and how life is not fair.

Only when we get over feeling the Universe is out to get us can we eliminate some of our distress.

The plain and simple fact of the matter is I was a pretty logical candidate for developing AMD. I am female, white and of a certain age. My father had AMD. My diet runs toward fatty foods and I have high blood pressure. After I took another look at the risk factors I have I had to admit “why me?” was not the proper question. The more appropriate question would be “why not me?” What would make me so special I could have all those risk factors and not develop the condition?

The third tenet in radical acceptance says life is worth living in spite of the pain. (I try to live a full life in spite of my ‘blurries’. I also end up with muscle aches to prove it. Somebody remind me to act my age….later.)

In fact, DBT says pain has some very positive purposes. (Now let’s not get too crazy here.)

Nietzsche really did say “that which does not kill us makes us stronger”. I wasn’t there but I take it on good faith. Jane Juza said in The Positive of Experiencing Pain that pain tends to make us appreciate the good in our lives and to seek out meaning and purpose. Frankl said the meaning and purpose in your life may be in how you endure with grace.

So, there you have it, a preview of my lesson on radical acceptance. Hope it made sense. Going to bed a little early now. I think my pain is telling me I played too hard. Information, another benefit of pain. Night!

written April 30, 2017

Continue reading “Why NOT Me?”

When You Say That, I Feel…

Ouch. I danced for about three hours straight at the Mom Prom last evening (Mom Prom=over 21, all female, children optional). Now I am waiting for a ride to the river to kayak.

Left to my own devices I probably would not have entertained the idea, but I had the invitation. I take what is offered and am glad for it in the moment.  Even though I have a twinge in my upper back. How did I get THAT? To reiterate: ouch.

Lin said the page on stupid things people say led to a Facebook group discussion. Apparently the world over people say dumb sh….stuff.

Doesn’t surprise me. Race, creed, nationality? Doesn’t matter. It is my contention the huge majority of people are basically kind. They are uncomfortable when faced with the suffering of others and don’t know how to ‘fix’ it. They therefore make inane comments and sometimes downright stupid suggestions.

What people often don’t realize is that they do not need to fix anything! Very often the best thing they can do is just listen to us vent. I will occasionally define the parameters of the exchange. You know: “I know you cannot do anything about this, but I really need you to listen to me.”

If outright telling them you are not asking for advice doesn’t work, or if the dumb questions or advice just ambush you, Shamelessmag.com’s article about Unhelpful “Helpers” has some suggestions. Now, personally, I found some of their examples a tad blunt (amazing considering I am often the queen of tactless), but the premises behind them are sound.

Let people know you are not their cousin’s wife’s uncle and that everyone with AMD is unique. Remind them you are dealing with a doctor who is knowledgeable and whom you trust. (if that is not the case, start shopping for a good retinologist!) Refer them to the web to research the condition. (That should shut them up!)

You can also acknowledge what you believe are the feelings behind the comments. Acknowledge they are trying to help and that they feel helpless in the face of your condition. Acknowledge you often feel the same way and ask for emotional support.

An oldie but goodie to use might be “I messages”. The formula is pretty simple:

“When you do this specific thing I feel in this particular way and in the future I would like you to do this.”

For example: “When you tell me I am only losing my central vision and will not go ‘blind’, I feel you are trivializing my problems and I do not feel supported. Losing central vision is distressing to me and in future I would like you to listen to me and not say that.”

So, take that! ?

And back to my basic premise: when all is said and done, most people are just trying in their own, clumsy ways to help. And when there are 100 ways to do anything, 99 wrong, 1 right, most people will go through the 99 before they stumble on what they should do. Be patient and help them out. Tell them what you need. Remember this is a learning experience for all of us.

Continue reading “When You Say That, I Feel…”

Cheap Entertainment

Just back from a walk with the Beastie Baby. This time I got to smell the honeysuckle and listen to the bees buzz. Spring in Central Pennsylvania. “Enjoy! Enjoy!” (Thank you to Manny Gordon for that quote!)

Lin got me another article on geographic atrophy and scotomata. I have not read it yet. I will let you know but right now I want to talk about floaters.

We had a yoga class outside in the middle of the afternoon. When I was in savasana (corpse pose or final rest in English. I like the Sanskrit much better!), I was watching my floater swim around in my eyeball. Hey, what can I say? I take my entertainment where I can find it!?

I have been told that eventually most floaters settle to the bottom and just hang out there. However, when I am in yoga and doing all sorts of poses, mine gets riled up and ‘swims’, my floater is in my right eye and looks like a mosquito larva.

Or at least, after some deliberation, that is what I decided. Cheap entertainment. Sort of like lying in the grass and deciding what the clouds look like.

Floaters are one more delightful thing we develop as we get older. The gel in our eyes – the vitreous – separates. I had a chocolate pudding analogy before. Know how pudding separates into fluid and clumps of pudding when it has been in the fridge too long? Same basic idea. The floaters are the clumps.

I have had this particular floater for years. You probably have some ‘old friends’ in your eyes as well. However, if those old friends suddenly have a lot of company from other floaters, if you get flashes, if you get a curtain-like shadow (see photo to the left) or if peripheral vision starts going dark, get to your eye doctor stat. These are signs of serious retinal damage and need to be dealt with as soon as possible.

The Mayo Clinic page on eye floaters lists a series of questions for which you might want to have answers when you go to your doctor. They also list some possible treatments for floaters. Laser surgery is used infrequently due to the serious risks involved. The other possible treatment is a vitrectomy. That is not fun and games either.

If possible, the best and safest thing to do is to just put up with the floaters. Shake your head. Watch them float. Think what they remind you of. If nothing else, they are cheap entertainment.

written April 29th, 2017

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Attitude Adjustment

Alrightee then. End of feeling sorry for myself…for now. When the horse throws you off, you get back on and all that. It is attitude adjustment time.

Counting my ‘positive pennies’ the first half of today has been good. I tried my gown on this morning and it fit. That is a positive. I picked it up for $25 two years ago at the thrift store. It is actually a pretty gown for $25. This evening my gown and I go to the Mom Prom.

My husband dropped me off on the other side of those two, scary main roads and I rode my bike the rest of the way in to Zumba at the Y. Then I rode into town, chained my bike at the library and went to the street fair.

Since my class was putting on a demonstration, I participated. Participation is often a good thing. Afterwards I wandered around, ate fresh-cut fries and a chocolate brownie (we have discussed my dietary shortcomings; haven’t we?) Also ran into several people I know.

Back on the bike for the ride home. Coming home I passed a whole hedge of lilac bushes. I could have stood there all day and taken in the fragrance.

All told not at all bad start to my day. I may have age-related macular degeneration and central vision loss but I can still savor chocolate brownies and smell the lilacs. Oh, and they had this great group that does Chicago and Al Jarreau and all sort of music from our youth (assuming you are also on the upward side of 60!) The lead singer is excellent. I enjoyed their performance.

Attitude adjustment. Just like the three most important things in real estate are location, location, location, it appears the three most important things in keeping yourself mentally healthy with AMD are attitude, attitude, attitude.

I found a 2005 study by Jennifer Tolman et al. The study was on psychosocial adaptation to vision loss. Also on adaptation’s relationship to depression. Tolman and her people discovered it really is basically a matter of acceptance and compensation for vision loss. It is the internal experience that really counts. You know: if you believe you can’t, you can’t. If you believe you won’t, you won’t. Ya gotta believe in the possibilities in your life.

Tolman published the Adaptation to Vision Loss Scale (AVL) in her article. It consists of about 24 yes/no questions. Many of them have to do with self and personal power. It is interesting to look through. If you take it and find yourself answering as if you are powerless and/or have lost yourself, you might want to consider getting some help. Depression is a possibility.

Another thing she found related to depression was making use of services and adaptive technology, etc. I see that as a chicken and the egg sort of thing. Services make you less depressed but you have to have the motivation to go look first.

So that is pretty much it. We all have our setbacks. We just cannot wallow too long. Sometimes it is time for an attitude adjustment.

written April 29th, 2017

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